Nov. 21, 2012
TOPIC: Patients & Members
Posted at November 21, 2012 7:14 pm
When I arrived through the gates at the Barretstown camp, I was eager to meet my campers and fellow group of volunteers, caras, Gaelic for friend. What I didn’t know is what a lasting impact this camp, set in Ballymore Eustace, Ireland, would have on my life. read more >
Oct. 25, 2012
Posted at October 25, 2012 7:58 pm
Oct. 22, 2012
TOPIC: Patients & Members
Posted at October 22, 2012 3:16 pm
From Left to Right: Mary Dunkle- NORD, Christy Greeley- Cystinosis Research Network, Ron Bartek-Friedrich’s Ataxia Research Alliance, Jeff Wuchich- Alternating Hemiplegia of Childhood Foundation, Mirta Avila Santos, American Behcet’s Disease Association (ABDA), Sandy McElgunn- ABDA, Megan O’Boyle- Phelan-McDermid Syndrome Foundation
Within the first hour of the Annual DIA-NORD U.S. Conference on Rare Diseases & Orphan Products, NORD and DIA hosted a panel of six patient advocates to help remind everyone that patients are at the heart of everything we will be talking about in the next few days.
Oct. 22, 2012
TOPIC: Featured News, Patients & Members
Posted at October 22, 2012 11:15 am
Patient representatives who missed the recent NIH webinar regarding the planned expansion of the NIH Undiagnosed Diseases Program may still submit input on the questions discussed.
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